Role of Patient and Maternal Knowledge in Awareness and Treatment Adherence for Thalassemia Major

Abstract

Background: Thalassemia Major is an inherited severe blood disorder that requires lifelong management, including regular and adequate transfusions along with iron chelation therapy. Knowledge of the disease and adherence to treatment protocols are the two important factors that can influence the outcome of the disease.

Objective: The impact of the knowledge of the patients and mothers on their awareness and treatment adherence in thalassemia major patient is to be assessed, with emphasis on the level of education on management of healthcare.

Methods: A cross-sectional design was employed, with 57 respondents selected from thalassemia centers dedicated to treating the disease, through convenience sampling. The data was collected using structured questionnaires to assess the demographic profiles, knowledge with respect to Thalassemia Major, and their adherence to the treatment protocols. Statistical analysis was done using the SPSS version 25, which concentrated on descriptive statistics and chi-square tests to evaluate the relationships of knowledge levels with adherence.

Results: Mean age = 19.42, 56.1% females, and 42.1% males. A significantly high majority (93%) believed that thalassemia was a genetic disorder; however, misconceptions about available treatment were quite frequent. Regular blood transfusion at 4-week intervals was the most common form of treatment adherence reported (45.6%). While there was a high level of knowledge on general iron chelation therapy of 89.5%, only 64.9% knew the chelating agent being used. The other moderate adherence indicators were the rate of regular visits for follow-up at 44%.

Conclusion: Maternal knowledge and patient knowledge were significantly associated with the management of Thalassemia Major. Better educational interventions will show better adherence and thereby patient outcomes.

Keywords: Thalassemia Major, Patient Knowledge, Treatment Adherence, Blood Disorders, Iron Chelation Therapy, Genetic Diseases, Healthcare Management, Educational Interventions